Still trying to cope with the news....

[ttowntiger87]

Hello to all who read this...I can only hope and pray that you find a place of remission.

I am new to this site, but have looked around alot and have found it to be extremely helpful. Here is my story...

I went out on a Friday night in February of this year with my husband and some friends. Because it was during lent, I knew I could not have meat, and ordered Lobster Ravioli. I had also consumed a couple of Capt. and Cokes. I woke up at 2 am in horrible pain. I was vomitting and had a bad case of diarreaha. I just assumed it was food/alcohol poisoning. This lasted for about 8 hours. After the cramping went away, I felt better...just REALLY tired. I must have slept for two days straight. Three weeks later, the same exact symptoms occurred. The cramping went away like before, but I continued to have nausea and some abdominal pain that would not go away. This time, all I ate was a bowl of cereal and took a multivitamin. I decided to go to the doctor.

The doctor ordered an abdominal/pelvic CT scan. The results came back as "probable Crohn's Disease". I made an appointment with a gastroenterologist. He explained that the CT scan showed an approximate 3cm long portion of my ileum that was inflamed. He prescribed me Entocort, which seemed to help with my symptoms immediately. He also ordered the Prometheus Blood Test and a colonoscopy/endoscopy. The endoscopy was normal, the colonoscopy showed an inflamed ileocecal valve and terminal ileum, along with some ulcerations. I was completely floored. :ywow: I was totally not expecting this diagnoses.

At my most recent gastro. appt., I was put on Asacol, and was told that the Prometheus Test came back positive for Crohn's. Also, biopsies that were taken of my tissue came back positive. I really and truly felt pretty good before my first "flare" in Feb.

Before this diagnosis, I considered myself in GREAT shape. I work out 4 days a week, and have NEVER taken medication long term. I don't even like taking Tylenol! Now I have learned that I must take medication for the rest of my life and it's a bit disheartening. I know that I will eventually be fine, but right now I am still in "shock"

 

[Mia E]

Hi and welcome!!
I was given my diagnosis 3 wks ago but it was after a year of symptoms and then surgery before I got it. Even then I cried lots and have read loads about what it means in the future. I can't say I know what it would have felt like if it came out of the blue like it did for you, it must be such a shock! You will find lots of scary info online (and on here!) but you will also notice lots of people on here who are doing really well, it has helped me see that I can live normally with this illness, just maybe making a few adjustments at times.
You're not alone x

 

[Trysha]

Hi ttown,
It is a shock to be told you have a chronic illness and takes a bit of getting used to.
The fact that you feel you have been in good health prior to the current course of events would suggest that you will cope and overcome the obstacles as time goes on.
The forum has lots of good information for you to explore and many good people all of whom are in the same situation. It will get better---- believe it--
As you say you will be fine and with such a positive attitude you will succeed.
All the best and feel better soon
Hugs and best wishes
Trysha

 

[Angrybird]

Hello and welcome to the forum. That was a quick trip to diagnosis which is good but boy what a shock it must have been You have come to the right place to get lots of helpful advice and support though. How are you now doing on the meds - feeling any better? The fact that you were really well and fit before the problems started will hopefully mean that the body will recover well and quickly from this flare.

Wishing you all the best.

AB
xx

 

[ttowntiger87]

Thanks!

I want to thank you all for your kind words. I can only hope and pray that you all are better soon! The meds are helping me ALOT and I am feeling GREAT! Thanks again for making me feel like I am not alone in this!

 

[ttowntiger87]

Hi and welcome!!
I was given my diagnosis 3 wks ago but it was after a year of symptoms and then surgery before I got it. Even then I cried lots and have read loads about what it means in the future. I can't say I know what it would have felt like if it came out of the blue like it did for you, it must be such a shock! You will find lots of scary info online (and on here!) but you will also notice lots of people on here who are doing really well, it has helped me see that I can live normally with this illness, just maybe making a few adjustments at times.
You're not alone x

Thank you for your kind words. I can only imagine the pain you must have endured for that year. As you mentioned, I have also found stories of hope and despair. I am going to keep a positive attitude and also keep praying that they may find a cure for this disease!

 

[ttowntiger87]

Hi ttown,
It is a shock to be told you have a chronic illness and takes a bit of getting used to.
The fact that you feel you have been in good health prior to the current course of events would suggest that you will cope and overcome the obstacles as time goes on.
The forum has lots of good information for you to explore and many good people all of whom are in the same situation. It will get better---- believe it--
As you say you will be fine and with such a positive attitude you will succeed.
All the best and feel better soon
Hugs and best wishes
Trysha

Thank you for reading my story and responding. Best wishes to you also!

 

[ttowntiger87]

Hello and welcome to the forum. That was a quick trip to diagnosis which is good but boy what a shock it must have been You have come to the right place to get lots of helpful advice and support though. How are you now doing on the meds - feeling any better? The fact that you were really well and fit before the problems started will hopefully mean that the body will recover well and quickly from this flare.

Wishing you all the best.

AB
xx

Thanks for reading my story. Yes it was an awful shock...still in it I think! But the meds are helping tremendously. I am very thankful. I wish everyone on this forum could have the same quick relief from medication that came to me! Take care of yourself!

 

[Astra]

Hiya and welcome

Yes that was a quick diagnosis, well done you!
You won't be on Entocort for a long time, usually 3-4 months, but perhaps long term for the 5ASA - Asacol; I'm on it's sister Pentasa.
Just don't do what I did and become complacent in the early days of diagnosis; cos I felt better I thought I was cured, and stopped my meds!
BIG MISTAKE!
Anyway I'm in remission now, no symptoms at all, you'll get there soon, good luck and
lotsa luv
Joan xxx

 

[David]

A very hearty welcome to you. I'm sorry to hear about your diagnosis but at least you can properly treat the issue now.

One thing I wanted to talk about was vitamin B12 and vitamin D. If you hangout on this forum, you'll see me mention it alot because people with Crohn's Disease are very commonly deficient in one or both. If you haven't had your levels tested, I strongly suggest you do so, especially since you have active disease in your ileum/terminal ileum area. And when you do get the results, get the actual number from the doctor so you can track your progress over time and determine if you're going up, down, or staying about the same.

We're here for you anytime you need us

 

[ttowntiger87]

Well, it has been almost one year since I have posted on this thread so I thought I would update. This last year has been horrible. I have never really felt the same since I was diagnosed. I have been on Remicade since August and it hasn't really helped. I was in the hospital in February with a bowel obstruction for a whole week. I am going in for a surgical consult this week. I have been on prednisone for two months and although I am feeling better, the side effects are driving me crazy. I am hoping that removing the diseased portion of my ileum will finally put me into remission because I am starting a new job, started my Master's Degree, and don't have time for any of this! Started out trying to stay positive, but I am getting worn out!! Please pray for me.

 

[Angrybird]

Thanks for the update hun, I am sorry it is not with better news :hug: Just to confirm is the Remi the only other med that has been tried apart from the Asacol? I take it the obstruction was down to scar tissue and not inflammation? What side effects are you getting with the Pred and are you in a calcium supplement for this?

 

[ttowntiger87]

Angrybird, I have been on Enticort before also. I am currently on Remi, prednisone, and Asacol. Remi is the first biologic I have tried. My doctor says it is the best, and I believe her. The problem is the side effects of the Prednisone. I am anxious, shaky, can't sleep, and gaining a lot of weight. You know, the usual prednisone stuff! My obstruction was due to inflammation not scar tissue. I almost can't wait for my surgery as I hope I can get off of the prednisone and still feel good. I am not on calcium at this point, but I know I need to be. I have been reading on here that it is very important. I promise I will do that asap! Thank you very much for responding to me! It helps to know I am not alone!

 

[Angrybird]

I am a little surprised that surgery is being considered when there are other meds that could be tried to keep the inflammation at bay - what explanation has your doc given for this? Is the plan to continue with your current meds after the op?